Wednesday, September 17, 2014

False Security

This was my last entry about this journey- just so you have the whole picture.

False Security - I guess that's what I should call it. It wasn't false "hope" because that would indicate we thought there was...more. No, no. We thought it was over. We thought we went through the woods, into the tunnel, and came out the other side. Unfortunately that is not the case.

The tics are back. It's September, so it's not unlike any of the other five Septembers that came before this one. The allergy-esque tics are always there...but for whatever reason, they seem to get worse in September. It was September three years ago that he rubbed a hole right into the top of his nose. I think it was two Septembers ago he was ripping at his eyes.

Let me just go through the list before getting a laundry list of unsolicited opinions and advice.
  • It's every month. There is no month this doesn't go on. September. December. May. So it isn't a typical allergy
  • I've used fragrance-free detergents. Didn't make a difference.
  • He's had his tonsils and adenoids out already.
  • He says he's "itchy".
  • He's been on every antibiotic known to man
  • He's gone the holistic route to some extent
  • He pulls on his nose and wipes across his mouth
  • When it's really bad, he scratches in his hair and rubs his eyes
  • He's taken a daily OTC allergy med (Allegra, Zyrtec, Claritin)
  • He's taken an as needed allergy med (Benadryl)
  • Been using a "non-allergic" nasal spray 2x a day and saline spray 2x a day
  • He's been on inhalers- Albuterol, Xopenex
  • He's had allergy testing (skin test) 3x and blood work. No allergies showed up.
  • Sometimes he gets a rash on his face but it goes away in a few days
  • Sometimes when he's around a dog, it's worse. But he still does it after being with the dog.
  • When he uses crayons it's worse. But when he isn't using crayons he still does it all.
So that's it in a nutshell. The worst is the nose pulling and mouth wiping. The mouth wiping is relatively new. That's been going on since sometime in August. There are also times he isn't really doing any of them. But when we are in a time he IS doing it, a lot, it's hard to remember when and how long ago it was that he WASN'T doing it.

I've also been told it could be anxiety. If it turns out that's what it is, you'll be able to knock us down with a feather. E seems like he would be the least anxious kid on the planet. He's confident, outgoing...he has SWAG. And he SAYS HE'S ITCHY. Is itchy a sign of anxiety??? I have a degree in Psychology but this...this is well out of the realm of my classroom knowledge. The ONLY indication I have ever seen in him *might* be that he grinds his teeth when he sleeps. I don't know much about teeth grinding, aside from how gross and annoying it sounds. But it seems like it would be an anxiety driven coping mechanism. I just don't really believe this is anxiety though. Anxiety is last resort answer for me. Because he is visibly uncomfortable. He says the inside of his nostrils are itchy. Around his mouth is irritated. So the physical signs ARE there. We just don't know if it's chicken or egg. Did he make the physical signs by the severity of the tics or is he having tics because of the physical signs we see there? I. DON'T. KNOW. And neither does anyone else.

Yes, it happens in September, with more intensity, but I don't think it has anything to do with school. He still doesn't understand days of the week or months or time. So school *looming* is neither here nor there. He also loves school, his friends, teachers, etc. This time it would be a new school in the morning, but he was excited to start. And the tics had been going on in the summer anyway.

When it turned out that he had that sinus infection that was affecting him in these ways, it made sense. It makes sense that when you have an infection far up in your body (nose), it would make you jittery, fidgety, etc. We went back to the ENT in August when this started up again and he said that it didn't appear to be an infection. He put him on the hardcore antibiotics anyway just in case. We were pretty much insistent. For us, that seemed to be the only thing that worked. Do I want him constantly on antibiotics? HELL NO. Do I see any other choice? No. I really don't. I've been to five pediatricians. Infectious disease doctor. Two ENT docs. An OT lady. Two allergists. Oh, and the last one is an immunologist. The immunologist said that basically in our case, if antibiotics work, then use them. But she also gave us a scrip for more bloodwork that I am assuming is more in-depth than any other previous bloodwork we've had done.

Poor kid. Has been poked, prodded, has taken the grossest, goopiest, nastiest medications ever. He never complains or gives a hassle. He gets blood taken like a champ. No tears and no whining. What's sad is that he's like that because this is all his "normal".

Sure, there is worse. I know kids battling way "worse". But everyone's problems are important...because they're theirs. This is our problem, for FIVE YEARS. And it SUCKS. It's the most frustrating experience I've ever had. And I'm a pretty frustrated person in general. But this...this takes the cake. I also just can't understand why no doctor seems to care or be interested enough to find out what the flying F is wrong with him. Why isn't some doctor so hungry for ego driven accolades, that he or she wants to be the one to crack the case?? It's a lot of "I don't know", "Hmm, that's odd", and "I don't see anything..."

He just started Kindergarten. He's a self-tattler. He's been telling us he gets in trouble in school but he's not sure why. He says he is supposed to sit one of three ways. He says he sits how he's supposed to but gets in trouble for moving while sitting. I can't help but think some of it has to be these tics. I'm sure part of it is being a five year old fidgety boy, but he has an added issue of ticking out like a meth-head. The other day it was so out of control all I could think of was Emmett on Queer as Folk calling Blake a "tweaked out twinkie". He looked like a messed up tweaker and it's breaking my heart. And if that's what he's getting in trouble for, frankly, I'm afraid it's going to break his spirit.

I don't even know what the point of putting this out there. I just needed to get it out. Because both B and I are at our wits end. No, you don't want some awful diagnosis. But you want SOMETHING. Something to go on. Some direction to take. Right now, we're the doctors. We're the ones randomly picking specialists and specialties, hoping, someone will have something different to say. Different to try. A path. Hope. A light at the end of this tunnel.

Next step...more bloodwork. Stay tuned.

1 comment:

  1. I am sorry you are going through this. I know you don't think it is anxiety but have you seen a child psychologist? My daughter had issues peeing, always feeling wet no matter how much she wipes. Long story short, it lasted over a year and was anxiety related. I hope you find some answers soon.